Decisions at the end of life: cultural considerations beyond medical ethics.
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Biomedical subjects
Publications and source records attributed to M K Goldstein.
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Measured preferences have been reported to vary with the method of elicitation and respondent population surveyed. We elicited utilities for Gaucher disease using a multimedia implementation of the time trade-off, standard gamble, and a conceptually different, largely untested approach, the risk-risk trade-off, from those who are healthy, those with a chronic illness and those with Gaucher disease. The risk-risk trade-off produced significantly lower utilities than the other two preference assessment methods and had the poorest test-retest reliability. The respondent's self-rated current health state utility was the most important determinant of utility values elicited by the time trade-off and standard gamble for the hypothetical health states. Our results do not support the use of our implementation of the risk-risk trade-off method. In eliciting preferences for hypothetical health states from the general population, the subjective rating of a respondent's own health state should be considered in determining representative population groups.
OBJECTIVES: The authors evaluate a measure of the validity of utility elicitations and study the potential effects of invalid elicitations on population utility values. METHODS: The authors used a computerized survey to describe and measure preferences for three common side-effects of anti-psychotic drugs (tardive dyskinesia [TD], akathesia [AKA], pseudo-parkinsonism). The authors compared the validity of elicitations in 41 healthy volunteers to 22 schizophrenic patients. Preferences were measured using visual analog scale (VAS), pair-wise comparison (PWC), and the Standard Gamble (SG) methods. To assess the validity of each groups' responses, the authors compared the consistency of subjects' rank-order of the desirability of states across methods of preferences assessment (CAMPA). RESULTS: All healthy volunteers and 82% of patients completed the computer survey; of these subjects, 97% of healthy volunteers and 70% of patients indicated they thought they understood the task required of them. However, only 78% of healthy subjects and 44% of patients had a consistent rank ordering of preferences among VAS and PWC ratings; only 80% and 61%, respectively, had a consistent rank ordering preferences among SG and PWC ratings. For two of the three health states, inconsistent subjects had statistically higher SG utilities (for TD, 0.94 versus 0.87, and for AKA 0.92 versus 0.86; P < 0.05). CONCLUSIONS: The CAMPA test can identify potentially invalid preference ratings. Potentially invalid preference ratings may bias the "population" utilities for health states.
Culture is not something apart from us. It is always here, and we, like fish in an ocean, may be blind to the water in which we swim. We recommend that, in addition to learning as much as possible about people from cultures other than our own, we consider carefully the cultural roots of our own thoughts and actions. A combination of respectful behavior and a conscientious effort to understand individuals from another culture will go far in enabling us to work well with dying patients from many backgrounds.
Elderly people in the United States often receive treatment through an enormous array of medical technology when they become critically ill. Some, or all, such interventions may be unwanted, and patients have the right to be informed about what prospects lie ahead. CPR, with survival rates of 2% to 20%, rarely has the effect for which it was intended, as studies over the last two decades have repeatedly demonstrated. Although it is not clear that elderly people are at higher risk for poor outcomes of CPR, it is clear most of them do not possess sufficient knowledge about either CPR or its usual outcome to make an informed choice. Ideally, an individual should choose his or her own resuscitation status, but evidence exists indicating surrogates more often than not make this decision. This is unfortunate, because both surrogates and physicians are poor judges of patients' resuscitation preferences. Advance directives, especially when coupled with effective physician-patient communication, will aid elderly persons in making decisions about life support. We encourage all physicians who care for the elderly to avert many of tomorrow's ethical dilemmas by communicating with their healthy patients today.
Decisions about initiation and withdrawal of life-sustaining artificial nutrition and hydration are complex and sometimes are agonizing to make. Artificial feeding is considered by most medical ethicists to be a medical intervention about which decisions should be made based on the benefits, risks, and burdens of the treatment. State law varies, particularly with regard to the inclusion of artificial feeding in advance directives and in laws about its discontinuance. Conditions in which it is common for patients or families to consider refusal of artificial feeding include terminal cancer, advanced dementia, and persistent vegetative state. Alternative approaches to nutrition, such as offering favorite foods or treating underlying depression, may obviate the need for tube feeding. Competent patients may refuse any medical treatment, including life-sustaining treatment. An appropriate proxy decision maker may also refuse treatment on behalf of a mentally incapacitated patient.
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Functional outcomes of clinical trials are often reported as number of dependencies in activities of daily living (ADLs). Quality-weighting for the ADLs has not been reported. We designed and pilot-tested ADLIB (ADL Index Builder), a multimedia computer program, that presents ADL health states to subjects and elicits from subjects a rating for the quality of life of each health state. Subjects, who were patients over age 50 without previous computer experience, found the program easy to use. Health care professionals specializing in geriatrics confirmed that the ADL presentations used in the program are in accord with typical practice in scoring ADLs. We plan to use the program to obtain population-based preference ratings that can be used to assess efficacy of clinical trials and to provide quality-weights for cost-effectiveness analysis.
Fifty-nine healthy senior center participants were interviewed to determine how, when, and why the durable power of attorney for health care is being used. The 21 users of the durable power of attorney for health care executed a form for the expected reasons; however, a majority had not given a copy of the form to their physician and few had discussed details of their preferences with the proxy. Of the 38 nonusers, the most frequent reasons for not executing a durable power of attorney for health care were: lack of awareness of the form, procrastination, and difficulty choosing a proxy. The new Patient Self-Determination Act requiring hospitals to inform patients of advance directives will help to overcome some of the obstacles in use of the durable power of attorney for health care; however, community education must still be encouraged.
OBJECTIVE: To determine the reliability of rapid screening by clinically derived geriatric criteria in predicting outcomes of elderly hospitalized patients. DESIGN: Prospective cohort study of 985 patients screened at the time of hospital admission and followed for 1 year with respect to the outcomes of mortality, hospital readmission, and nursing home utilization. SETTING: Palo Alto Veterans Affairs Medical Center, a tertiary care teaching hospital. SUBJECTS: Male patients 65 years of age and older admitted to the Medical and Surgical services during the period from October 1, 1985 through September 30, 1986. RESULTS: Patients were grouped by specific screening criteria into three groups of increasing frailty: Independent, Frail, and Severely Impaired. Each criterion focused on a geriatric condition and was designed to serve as a marker for frailty. Increasing frailty was significantly correlated with increasing length of hospital stay (P less than 0.0001), nursing home utilization (P less than 0.0001), and mortality (P less than 0.0001). Multivariate analyses revealed that the clinical groups were more predictive of mortality and nursing home utilization than were age or Diagnosis-Related Groups (DRGs). Rehospitalization was unrelated to age, clinical group, or DRG, suggesting that utilization may not be driven by the clinical factors measured in this study. CONCLUSIONS: Rapid clinical screening using specific geriatric criteria is effective in identifying frail older subjects at risk for mortality and nursing home utilization. Our findings suggest that geriatric syndromes are more predictive of adverse outcomes than diagnosis per se. This well operationalized screening process is inexpensive as well as effective and could easily be introduced into other hospital settings.
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Health care professionals need to be well informed about advance directives for medical care in the event a patient becomes incapacitated. The Patient Self-Determination Act requires that all patients be advised of their options at the time of hospital admission. Hospitals and health care professionals will need to work together to plan for implementing this law. We surveyed 215 physicians, nurses, and social workers at a Veterans Affairs Medical Center about the California advance directive, the Durable Power of Attorney for Health Care. Attitudes were generally positive. All of the social workers had heard of the durable power of attorney directive, but 36% of physicians and nurses had never heard of it and an additional 20% had no experience with one. For respondents who had heard of the directive, the mean knowledge score was 6.35 of a possible 10 (5 predicted by chance). Respondents brought up the issue of durable power of attorney with patients before a crisis only 19% of the time and determined whether one had been signed for only 16% of older patients in hospital. The most commonly cited reasons for failure to discuss this with patients were lack of proper forms, pamphlets, or a place to refer a patient. Of those who had ever seen such a document in use, 42% were aware of a problem with it at some time. Whereas attitudes toward advance directives are positive, many physicians and nurses had little knowledge of the Durable Power of Attorney for Health Care and were poorly equipped to discuss it with patients. We encourage educating hospital staff to prepare for the enactment of the Patient Self-Determination Act. We also recommend that the concerns raised by professionals about the use of a durable power of attorney be addressed.
Older women may experience sexual dysfunction due to many different causes. Some problems related to menopausal hormonal change may be easily treated with estrogen supplements. Other problems involve intricate interpersonal relations between the woman and her sexual partner and may require a combination of medical therapy and sexual counseling. Gynecologic cancer and cancer treatments are often accompanied by problems in sexual functioning. These problems may then impair relations and self-image, leading to a vicious circle of deteriorating social function. Some recommendations for the clinician follow. The clinician should maintain an attitude of openness to the possibility of sexual concerns in older women. Such concerns should be taken seriously and should not be dismissed as part of aging. Routine periodic health examinations can include a question such as "Do you have any concerns about your sexual life that you would like to discuss?" In follow-up visits for procedures with a high likelihood of causing sexual dysfunction, questions that would open the door to a discussion of sexuality should be asked. Sexual dysfunction should be recognized as a couple-oriented phenomenon. A woman's anxiety about her appearance, postoperative depression, or dyspareunia may be perceived by her partner as a sexual rejection and may initiate a cycle of decreasing contact or may even lead to erectile dysfunction. Sexual counseling should include both partners. When a surgical procedure that will probably have an impact on sexual function is contemplated, provide the patient and her partner with advance counseling. Descriptions of surgery should not be simply a statement of body parts to be removed but should specifically address the anticipated sexual effects. Counseling should include a description of basic anatomy and function of the genital organs. Illustrations and appropriate demonstration during the physical examination should be used to ensure the patient's understanding. Descriptions should be accurate without being either frightening or falsely reassuring. The patient should be counseled about the benefits of including her partner in discussions. Then, when possible, the sexual partner of the patient should be invited to sessions of advance counseling on contemplated procedures. Clinicians should remain open to the possibility that the sexual partner will be a nontraditional one, e.g., an unmarried male partner or another woman. The clinician should be alert to remediable causes of dysfunction. For example, decreased vaginal lubrication may be managed with use of water-soluble lubricants.(ABSTRACT TRUNCATED AT 400 WORDS)
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Ethical problems have become intrinsic to geriatric medicine. Physician's familiarity with ethical principles of medical decision-making, such as beneficence, autonomy, and justice, can be helpful. These principles can lead, however, to conflicting conclusions, and the decisions must be personal. An informed approach can help physicians resolve these increasingly commonplace dilemmas.
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